I felt the change as soon as I walked in the room. Baby Edward was no longer with us. Yes, I could see his small, puffy body on the warming bed where he had lain virtually motionless for most of the past month. Yes, the ventilator beside the bed maintained its steady woosh of air. Yes, the wave form flowing across the monitor above the bed displayed the activity of a still-beating heart. But the spirit I'd felt every time I'd entered his room was absent.
I think Julie, his day nurse, felt it as well. Usually smiling and lively, that evening she was quiet, somber.
We both had cared for Edward in recent weeks, so there was little for us to exchange. She walked to the bed, took Edward's hand in hers, kissed his forehead, and said good-bye. Then she left, and I was alone with Edward.
I sat down to review recent notes, but my mind was elsewhere. I went to Edward and stroked his bloated cheek. "I'm sorry, Eddie," I said. "I know you tried to fight, I hope you know we tried to help you. If tonight is your last night, then I am honored to be the one watching over you."
In the five months of his life, no one ever figured out what was wrong with Edward. He was born at 32 weeks' gestation, small and premature, but that didn't explain his steady deterioration. He had a small bowel obstruction, which is usually easily corrected by surgery. But from the start, he was sickly, unable to wean off the ventilator for more than a few days at a time. The surgery was delayed a week, a month, then longer, in hopes of building his strength. Every time the doctors believed he had turned the corner, he crashed. When they performed the surgery, he never recovered and could never tolerate the breast milk his mother had pumped and stored.
My first experience with Edward came a week after his surgery and a day after his latest code. He was in the quiet corner of the main unit at that time, on a ventilator, agitated, requiring frequent suctioning and many medications. Still a neophyte as a neonatal intensive care nurse, I knew Edward by reputation and dreaded the assignment.
His endotracheal tube appeared loose and needed to be retaped. Intimidated by his delicate condition, I resisted. I was hoping to get through this 12-hour shift and never have to deal with Edward again. However, 11 hours into the shift the tube slipped out and we had to perform an emergency reintubation. I had failed to do my job, and it could have cost Edward his life.
My next shift I volunteered to take him, wanting to face my fear and make up for my mistake.
The first thing I did was to retape his endotracheal tube.
The night shift charge nurse had moved Edward from the cacophony of the NICU to private quarters in a back room in hopes that the quiet might keep him settled. It was scary at first, being alone and outside the bustling unit. However, the solitude allowed me greater focus on Edward.
One day, his mother, Faye, a single, black woman of around 30 and devout in her faith, came to visit with a friend from church. I was surprised to hear her talk with her friend about how joyful she would be "the day I can bring Eddie home."
On the morning of this visit, Edward's serum potassium levels spiked so high it should have been fatal. I called the resident into the room. We stopped his total parenteral nutrition, the only infusion that could be dumping more potassium into his bloodstream. That afternoon, we held a meeting with Faye. She did not want us to withdraw life support, but our treatments were having no effect, and we had nothing left to offer. We decided simply to continue the treatments and medications he had been on. The next day, total parenteral nutrition was restarted.
One week later, I entered Edward's room for the last time. That night I performed the nursing rituals: recording his vital signs, giving his medications, changing his diaper, suctioning his lungs. I tried to make him comfortable. I turned the radio to classical music, and later I sang to him. In the middle of the night, I put on one of our long, well-worn isolation gowns for warmth; like a priest of old in vestments, holding a vigil.
Edward survived the night. In the morning, Pat came in to get report, while Vickie was working in the main unit. They had taken care of Edward the longest, and I was glad he waited for them to return. "I don't think it will be long now," I said. Pat nodded.
I said goodbye to Edward before going home. Later that morning, I called the unit. I only had to hear the tone of Pat's voice as she answered the phone.